For me, language often conveys more than meaning. French is a
language that is musical, capable of remarkable complexity. Navajo
is a language of mystery and a steadfast resolution. Italian is a
language of passion and strength.

Another language was spoken on April 27th, 2009 at the Edward R. Roybal Campus in Atlanta, Georgia. Over the years of writing and
maintaining the CFS Report, I have heard this language spoken many
times. It is a language that often goes unheard and unnoticed. It is
a language well-known to the chronic fatigue syndrome (CFS)
community.

Last Monday, a meeting hall within the Centers for Disease
Control resounded with personal stories of loss and suffering. An
intelligent, professional woman told of how she lost her youth to a
constant, grinding flu. A man, the primary caregiver for his wife,
recounted how his wife went from active partner to bedridden.
Another speaker, obviously fluent in the painful parlance, recounted
how she lost her family and her friends, painfully noting that
chronic fatigue syndrome was a different kind of “burden”. Yet
another man,
voice trembling, recalled losing his career and watching his family
suffer. I have heard these stories. For many of us, these stories
are both familiar and personal.

Medical researchers also spoke, challenging the CFS research
program’s narrow focus and investments. Dr. Nancy Klimas urged the
CDC to “open up to external investigators”. She urged them to
consider “the role of other chronic persistent re-infection in this
disease. The international feeling, but not necessarily the feeling
here in Atlanta, is that it is a very important…. You just can’t say
that you are not going to look at infectious disease. If there is
this much immune activation, there is either a pathogen or an
auto-immune disorder.”

Dr. Staci Stevens urged research reform: “Without defining
subsets clearly, it will preclude you from meeting your goals. You
won’t understand etiology, and you won’t understand clinical
management”. Dr. Lily Chu also spoke about clinical perspective:
“Selecting study subjects by using study criteria that has been
diluted, such that it no longer resembles the illness …will generate
erroneous and confusing results. For example, the Bibb County
registry, an excellent idea in concept, requires potential subjects
to only have had one month of severe fatigue to qualify.”

The CDC CFS research team said they were listening, and they
wanted to integrate the input into a fast-forming five year
strategic plan. Dr. Lonnie King, director of the National Center for
Zoonotic, Vector-Borne, and Enteric Diseases, told the story of a
CDC colleague whose story appeared in an internal ‘CDC Connects’
publication. Dr. King said the CDC employee’s story injected a
newfound personal incentive into the CFS program: “We need to focus
on the prevention side. So that when a patient like our CDC
colleague visits her doctor and says that “I am exhausted”, we want
to make sure that she leaves with hope, with good information, and
with hope for a productive future.”

Dr. William Reeves, who heads the program, emphasized that the
CDC was moving toward prevention, faithfully following the
recommendations of a CDC-appointed review committee: “The review
committee felt that the accomplishments of the research program --
over the last decade or so -- have been substantial. They felt our
current research projects address important issues. Their judgment
was that the CDC team currently leads the world.” Reeves continued:
“We are the Centers for Disease Control and Prevention. We
are not the NIH. We are not the FDA… Our goal is to conduct a public
health research program that will lead to the control and prevention
of CFS”.

The meeting attracted a “who’s who” of the CFS advocacy
community: Marly Silverman, Hillary Johnson, Kim McCleary, Tom
Kindlon, Dr. Mary Schweitzer, Cort Johnson, and Eileen Holderman
each spoke. I recognized each name. I also recognized
that -- at least on this day-- we spoke a common language, a common
message. Despite Reeve’s “lead the world” rhetoric, he does not have
the CFS community’s confidence. Investments at Emory University’s
psychiatry department and ABT Associates have been as restricted as
the undersized review panel that met weeks earlier. Within a week,
the panel quickly stamped out an evaluation that had every
appearance of being written by Dr. Peter White, a controversial
psychiatrist from the United Kingdom. White has had a penchant for
portraying CFS as a predominantly women’s disorder of malingering
beliefs and voluntary deconditioning.

The surprise of the afternoon came from a fiery Dr. Fred
Volinsky. Volinsky, a former Harvard professor, has worked with an
award-winning team comprised of the discoverers of the AIDS virus, a
Nobel Laureate, and winner of the Albert Lasker award. Volinsky
lashed out at the CDC CFS program for lacking a key requisite for
scientific success: “I am very outraged for the lack of funding in
this field….There isn’t enough being done by the NIH and the CDC,
and one of the roadblocks is that you need objective people. To make
progress, you can’t have people that don’t believe it is an organic
disease”.

The afternoon was filled with the sounds of a language that
people with CFS know well, a worn-out refrain that plays on, often
in the shadows. Notes common understanding filled the air. The CFS
community, researchers, and clinicians spoke with resonance, lasting
clarity. Change is needed, but it must be the right change. After
the meeting, Hillary Johnson wrote that those who spoke “are
looking for rational, competent, scientific research. And if the
agency didn't hear that this afternoon, it never will.” She is
right. Languages are for more than speaking; they are for listening.
But only if one takes the time – with an open and willing heart— to
hear them.